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Fibromyalgia Your pain may have a name!
Fibromyalgia is a real disease that can diminish the quality of life and cause major disabilities. It affects women more than men. To see a good definition, click here or click here. It is common to have overlapping syndromes and it's not in your head!!! Your pain is real and, most of the time, you suffer in silence. You have what seems like many unrelated symptoms and some people think you're a hypochondriac. But you know that most of the people who criticize you would not be able to tolerate what you do for one day let alone months or years.
The worst part about fibromyalgia is that you "look fine" so people don't understand the extent of your suffering. Worst of all is that, in most cases, your physician doesn't understand the extent of your suffering or thinks it's a psychological problem! Most physicians don't have a clue as to what fibromyalgia is. If a physician wants to learn about this disorder, click here.
My fibromyalgia symptoms began when I was around age 3 (1950) and heightened around age 8 (1955) but a diagnosis wasn't made until 1993! As a child, I was ridiculed for the spasms in my neck that caused twitching and for the inability to keep up with the other children in simple physical activities. I had excessive daytime sleepiness and "fibro-fog" so severe that I hardly learned anything in school. This forced me to educate myself. I discovered that if I were lying down, I could read and remember what I read so that's what I did. This "self-education" actually prepared me for my career as a scientist. I wasn't able to complete college but I started working as a "technical assistant" at age 19 and worked myself up to Research Associate. I was extremely fortunate to find two people who believed in me. The first was Dr. Leonard H. Cohen at the Institute for Cancer Research in Fox Chase, PA. Dr. Cohen saw my ability (at a time when I was still very shy and withdrawn) and he encouraged me to think. I learned to work standing up and in constant motion to try to keep awake. I remember one time when I fell asleep in Dr. Cohen's office while leaning against a filing cabinet! It really scared him. I worked for him from 1967-1971 until 2 hours before my daughter was born. My husband ran off when my daughter was 8 months old and I had to return to work. My next boss is not worth mentioning except to say that I was fortunate I only worked for him for a year! My next lucky break came in 1974 when I began working for Dr. Robert W. Colman, MD at the University of Pennsylvania. It was shortly after I began working there that I found Andrew Winokur, MD/Ph.D, a physician who was doing research on neurotransmitters and he was able to treat me for the hypersomnolence. Since then, I've become a very productive member of the scientific community. I moved to Temple University in December of 1978 with Dr. Colman when he took over the directorship of what is now called The Sol Sherry Thrombosis Research Center and it has been a rewarding 25 years. I have published 58 papers in scientific and medical journals and have 2 patents for my inventions. But success didn't come easy. What's worse than a physician not understanding your disorder is people in the scientific community believing that you're stupid because you don't have a Ph.D. or MD (let alone not even having a B.A. or B.S.). I am fortunate that I am stubborn but I had to always work 10 times harder than anyone else just to prove that I was capable. The one common trait that lifelong fibromyalgia patients seem to share is their stubbornness and determination. For me, the more I work, the less time I have to think about my pain. It is only when my pain gets into the 8-10 range, that I retreat and become unproductive until it subsides.
In January of 1997, I had an accident and sustained permanent injuries to my arm and shoulder. The accident also caused my fibromyalgia symptoms to worsen significantly. It has caused me to miss work and I very rarely go out anymore because of the fatigue and pain. Flares (headache, flu-like symptoms, muscle and joint aches and severe muscle spasms) happen often that increase pain to between 8 and 10. But with managed health care these days, it's difficult to get the treatments you need unless you pay for them yourself and it has gotten very expensive. Although my "medical care" used to be free (it now costs me $700 per month and I have no income), my physical therapy and Chiropractic care were not. If physicians don't understand the severity of the disorder then the insurance companies certainly don't have a clue! I have finally lost my job after 32.5 years as a biochemist. I went from being Robert Colman's #1 employee to trash after the accident.
All of us with fibromyalgia need to disseminate as much information as possible so that people recognize that we have a real disorder with severe limitations. The time has come for us to come out of hiding and educate our family, friends, co-workers employers and, especially, our physicians!
For information you can print out to give to your physician, pharmacist or physical therapist, click here. Devin J. Starlanyl, MD, a Fibromyalgia patient, herself, has provided the information on her website. More detailed information is included in her book (see below). I recommend this book!
Other things to try besides drugs:
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Design and Content by Cheryl Faye Schwartz Copyright © 1995-2007. All rights reserved. February 07, 2007 |
